The Boy Whose Skin Fell Off

This is one of the best documentaries ever made. One that everyone should watch before they shuffle off this mortal coil. Utterly heartbreaking, eye opening and thought provoking. It will stay in your mind somewhere for a long time after watching it. What a fine human being Jonny was. Utterly wise, witty and full of important values and lessons to teach those of us who are still here. It was made in an excellent way, and is flawless in its delivery from the start to the end. You will likely feel very affected by this film, I know I was the first time I watched it when it first aired almost 20 years ago. I can almost guarantee you will get goosebumps, tears, and as mentioned before. It will probably be one of the most moving and thought provoking documentaries you will ever watch in your life.

This is probably the best documentary I have seen in a very long time. Jonny Kennedy was and is still is a tragically beautiful inspiration. Not only was he a survivor of one of the most painful diseases out there, but he used his beauty to show the world that there is life after death and never to give up reaching people and spreading his love. Watching minutes of his life long struggle was heart-wrenching. Listening to his smart ass remarks and seeing his adorable gestures was heartwarming. And seeing him smile was indescribable. I feel blessed to have been able to be touched by this tiny giant. Please, if you ever have a chance to watch this film - consider yourself lucky to have met Jonny Kennedy.

A remarkable documentary about a truly remarkable young man who faced utter adversity everyday of his short life and met that impostor with strength and humor. Therer are some uncomfortable viewing scene's but John's disease and the suffering he endured constantly is not easy viewing. Look beyond this and find a spirited, rounded, funny and courageous soul trapped in a ravaged body. I watched this and left it feeling inspired by the incredible strength John possessed right up to the end.

I highly recommend this documentary both for its thoughtful delivery of the final months of John's life and for its impact it no doubt has had on bringing awareness on EB.

This man is nothing short of amazing. You truly feel as if you have lived his life with him throughout these tragic events, and cry along with his family in the end. He was so passionate about his cause, not just for himself, but to ensure others who will survive him do not have to go through this wretched pain. I watch this video every time I am having a bad or "down" day, and it always manages to make me see the great and brighter side of life, just like Jonny did, even with his unbearable pain. My only regret is not knowing about Jonny sooner, as I visited England 2 times during his life, and would have been able to say I'd met him. It is comforting to know Jonny is sitting on his cloud, pain free! Rest in peace, Dear Jonny. You deserve it!

Was flipping around the TV and HBO was showing a double whammy of unbelievably horrendous medical conditions, so I turned to my twin sister and said, "Hey this looks like fun," - truly I love documentaries - so we started watching it. At first I thought Jonni Kennedy was a young man, but then it was explained that due to his condition, he never went through puberty, thus the high voice and smaller body. He was on a crusade to raise money for his cause. He had the most wonderful sense of humor combined with a beautiful sense of spirituality... I cried, watched some more, laughed, got up to get another Kleenex, then cried some more. Once Jonni Kennedy's "time was up" he flew to heaven to be with the angels. He was more than ready; he had learned his lessons from this life and he was free. I highly recommend this. If you do not fall in love with this guy, you have no heart.